On Being a Cancer Survivor

Friday happened to have been that time of year again. The time when I have to see my oncologist for my yearly check-up and blood draw. I know I should be thankful that I don’t have to see him every 3, 4 and 6 months like I use to but it’s still nerve-racking to do it once a year.

Being a survivor is different from going through treatment. When you go through treatment you have something to focus on, fight and conquer. On this side of treatment you have nothing physically to fight for. When the battle is over you are left feeling like people expect you to move on and enjoy your life. I have enjoyed life to the fullest because I’ve been given the opportunity to live it. That in itself is the most amazing thing about my cancer journey. But it doesn’t make being a survivor easy.

Cancer will forever be branded upon you in some way that has changed you. Good change is that you have a life to live. You can watch your children grow up. You can grow old with your spouse. You have a rare opportunity to be a source of support to others who are dealing with cancer. New and amazing doors are open to you in a way you never would have imagined.

Other changes that don’t feel like blessings are the fact that cancer is always lurking in the back ground. No bump, headache, skin rash or whatever is just that. It almost always could be . . .   My cancer is not curable and the chances of it coming back are higher than not. My oncologist once reminded me of this fact but also told me that it’s a miracle that it hasn’t returned yet. I’ll take that miracle thank you! Secondary cancers are also a concern and I’ve had some scares over the years with different things. Thankfully, they’ve all turned out to be nothing.

Looking into the future is like looking into the unknown. Before cancer I assumed I’d grow old with Eric and hold my grandchildren. Now the little nagging feeling way back in my mind tells me that there is a possibility of that not happening. It’s hard not to sit and worry about the cancer coming back. There is nothing physically to battle because the battle is now in your mind. And that battle, my friend, is often harder to fight than the battle of treatment.

I may not always be happy that cancer entered my life. And sometimes I still do take life for granted. Don’t gasp in shock now . . . . I’m just being honest that the shock of the initial journey has long worn off and I’ve moved on. I’m sure I’m not the first survivor to think this. I’ve moved on but this once a year reminder keeps me rooted in the year 2000 when life changed forever. Sometimes I have a pity party for myself, get upset that I’ve got to drag cancer behind me and feel mad when I hear about people loosing their battle with it.

I may have to forever be linked to cancer but I don’t have to let it rule my life. When I first started going through treatment I decided that no matter what or if I lost my life that cancer was no longer going to rule over me. It may be invading my body but it didn’t have to invade my soul. The first thing I did was shave off all my hair before it all fell out. It was mine to take and not the cancer’s. I can continue to not allow cancer to rule my life by not allowing it to make me live in fear of it. I can’t control the fact that it could come back or not but I can control my anxiety and fears that it will.

Again, cancer has no control over me! I know this to be true because I believe with all my heart that God is in control of me. Did He give me cancer? I don’t know. But what I do know is that without cancer I wouldn’t be a changed person. He may not have prevented me from getting cancer but He did guide me through it and never left my side. I know this might be hard for some survivors to hear especially if you don’t believe in God. I know from past experience on the Stop Non-Hodgkin’s Lymphoma Message Board I frequented while going through treatment that many blamed God for what they and loved ones were going through. And because of it they didn’t want to have anything to do with Him. I know this because when I expressed the way I was dealing with my cancer through my faith that I got blasted. Told not to talk about faith on the board. It hurt to hear this but I understood. But the fact remains, I would be a fearful, angry and very bitter person as a result of my cancer journey had I not gone through it with Jesus at my side.

My cancer life verse is one that has been overused since I claimed it as my own 11 years ago. But I still cling to it and have added two other verses that follow it that often get overlooked.

“For I know the plans that I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future. Then you will call on Me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you seek Me with all your heart.” Jeremiah 29:11-13

I stand upon my faith and God’s promises because I know He has a plan for me. But I also know that it is not my place to tell Him how that plan should be lived out. Or that my life should be free of pain and suffering. He gives me a hope and a future regardless of my circumstances because I know He will guide me through them. And through it I grow and gain experience that can be used to stand alongside someone else. I love the last part of the above passage. It tells me that if I call upon and seek the Lord that He will be here for me.

I can’t stop the disease on a global scale but I can do something. I can make sure that I continue to move forward, continue to be a source of support and remember the many blessings God has brought into my life since that time. I will continue to say that cancer is a blessing to me. Without it I would have continued to be the person I was before it entered my life. I didn’t really care for that person. Fear ruled and reigned in her life and caused her to hide from everything. The person I am today is the result of my experience with cancer. It made me realize who I really was in God and to be more comfortable with being me. That, my friend, is a blessing.

Oh about my appointment . . . . it went well, blood work-up perfect and to top it off I lost 11 pounds since last year! Now I can go on and let cancer slide to the back of my mind and enjoy the year to come.

Everett Relay for Life

This morning the girls and I headed to join our friends at the Everett Relay for Life. Our friends will be doing the hard work of walking off and on all day and night. But me, I had the privilege to opening the event along with several other cancer survivors by participating in the Survivor’s Walk. I was very touched to receive a medal for being a 10 year survivor. But what deeply touched me was when the girls and I walked our lap while everyone else stood on the sidelines clapping and cheering us on. We and countless other loved ones are what they had trained and raised money for.

Thank you to all who continue to support me through my survivorship. I have no idea if and when I will have to fight the beast again but I know that I have been blessed to have enjoyed these past 10 years in good health. The money raised for Relay for Life and other organizations like The Leukemia Lymphoma Society have helped to contribute raising money to fund research to give us a cure.

Our friends, Branda & Theresa with Katelyn & Emily

Survivors opening the event

Let the walking begin!

Cheering the survivors on

My friend Branda has been a Relay for Life participant for many years

Spotlight on the Stop NHL Message Board

It was some time in the Fall of 2000 that I was first introduced to the Stop NLH Message Board. Little did I know that through a series of events that I would meet a group of people who would become a family to me and help guide and encourage me through the most difficult journey of my life.

After being diagnosed with Lymphoma I began to seek out local support groups. Sadly, each one was filled with older people and meet at a time when I had no one to watch my 4 month old and 3 year old. One facilitator said she’d gladly welcome me but that I may not find anyone to relate to because of my age. I was discouraged at the thought of facing this monster alone. I really wasn’t alone because I had a great support team in my husband, children, family and friends. But they didn’t have cancer so they couldn’t understand how I truly felt.

I had a good friend, Julia, post my story on a parenting website she frequented. From there I got an e-mail from Jill. Jill’s husband, Dave, had recently been diagnosed with Lymphoma and she wanted to direct me to a message board that was dedicated to the needs of patients, caregivers and families dealing with Non-Hodgkin’s Lymphoma (NHL). I was deeply touched by Julia for taking the time to post my story and Jill for reaching out to a total stranger. But because of their compassion for me I was directed to a place where I no longer felt alone.

The Stop NHL Message Board was created by a wonderful women, Trudi. Here is what  the dedication to Trudi says from the message board, “Trudi’s courage and conviction to help her husband Bruce battle his NHL because a source of will and determination to many battling this disease and to those that care for, and love them. She founded this board some years after Bruce was diagnosed in 1986. Ironically, in December 2006 Trudi was diagnosed with Non-Small Cell Lung Cancer. Sadly, after a short but courageous battle of her own, we lost Trudi on April 16, 2007. Bruce continues to do well. It was Trudi’s courage and conviction that made this board persevere and, in her memory, the reason you will always find a shoulder to lean on.”

I found the support I needed. I found the love and security I needed. I found answers to the tough questions I was struggling with. I found a place where I could go to any time of the day and have someone reach out to me through my posts.

Trudi was truly and inspiration. Her love and dedication to Bruce was amazing and encouraging. She was the Mama that wrapped her arms around each one of us. Loosing her took the wind out of us all and has left ripples through the message board that has not fully recovered from her loss.

As I read the dedication again I am saddened by the last sentence, “It was Trudi’s courage and conviction that made this board persevere and, in her memory, the reason you will always find a shoulder to lean on.” I’m saddened by this because the message board is often silent. Newbies come seeking support and aren’t getting the mega support that I received. Many of the old timers have been silent for whatever reason. I often think, “What would Trudi do?” I think Trudi would double her efforts to reach out through the web to people all over the world.

I think of why I haven’t been active like I use to be. The answer: It has been 10 years since I was diagnosed and treated. In all that time I have been blessed not to have to deal with that particular beast again. In some ways I feel guilty because of it. I feel like I don’t have anything to give to someone going through the thick of it when I’ve enjoyed every bit of my cancer/treatment free life. I still go through the stresses that us survivors face – the unknown of relapse, secondary cancers and the constant reminders through yearly oncology appointments that it’s never over.

After all these years I finally decided to change my Lymphoma website into a blog. It’s not perfect and not as nice as what my wonderful husband created for me many years ago. But this way I can be more involved in updating it and maybe posting how I feel as a survivor.

What I really want to do is reach out to those who need the support that I needed when I was the newbie freaked out of my mind and wanting support. If you or anyone you know is suffering from Non-Hodgkin’s Lymphoma I have a place for you. Drop by the Stop NHL Message Board and post your story. As for the rest of oldies . . . . stop by the message board more often. When you see a Newbie seeking support respond and let them know they aren’t alone.

Krista Jones 4.29.10